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MitoAction Blog

by Christine Cox

Please join MitoAction as we welcome Annette Hines, Esq., founding partner of the Special Needs Law Group of Massachusetts. Ms. Hines will be speaking Wednesday, May 27, 2015 at 12 p.m. on the basics of estate planning and special needs trusts laws in the U.S. Questions to be answered include:

May 21, 2015 Comments: 0
by GingerD
What is the historical use of marijuana for medical purposes? Are there legalities associated with medical marijuana use? When is medical cannabis a potential therapeutic option for patients with mitochondrial disease?
Apr 20, 2015 Comments: 0
by Cristy Balcells

Join us on Friday, March 6, 2015 with Dr. Sumit Parikh, Director of the Cleveland Clinic Neurogenetics, Metabolic and Mitochondrial Disease program, and past president of the Mitochondrial Medicine Society. Learn more about the 2014-2015 publications based on collaborations and consensus surveys completed by the Mitochondrial Medicine Society. The landmark series of publications is the first to address existing standards of care and most common approaches to diagnosis, use of supplements and symptom management by leaders in mitochondrial medicine around the US.

Feb 20, 2015 Comments: 0
by Cristy Balcells

Preventing mitochondrial disease in future generations: New techniques may stop the transmission of faulty DNA from mother to child.

-       Cristy Balcells RN MSN

Feb 16, 2015 Comments: 0
by GingerD

In the past year, the mitochondrial disease community has witnessed the closing of five clinics specializing in the treatment of mitochondrial disorders. While these clinic closures all have occurred for slightly different reasons, it has become clear that treatment of mitochondrial disorders, with their varied presentations, diagnostic difficulties, and limited available treatments, is not considered a priority at academic centers across the country.

Feb 13, 2015 Comments: 0
by GingerD

This is a joint teleconference between MitoAction & UMDF for the benefit of the mitochondrial disease community.

Feb 03, 2015 Comments: 0
by GingerD

Jan 01, 2015 Comments: 0
by Cristy Balcells

Mitochondrial disorders are characterized by complex presentation of multiple symptoms. Due to a variety of factors, including heterogenity of the disease, erratic symptom presentation and general lack of awareness about the condition, families with mitochondrial disease are more often faced with accusations of medical child abuse than other conditions. Living with mitochondrial disease and serving as one's own advocate impacts the entire family on a daily basis.

Dec 12, 2014 Comments: 0
by Christine Cox
Last spring, MitoAction announced the formation of the Advocacy Task Force to address recurrent and widespread allegations of Munchausen Syndrome, Munchausen Syndrome by Proxy, and Medical Child Abuse throughout the mitochondrial disease community.  The purpose of the Advocacy Task Force is to provide a well-reasoned community response to this issue from members of our disease community. 
Dec 10, 2014 Comments: 0
by Christine Cox

MitoAction has joined Patients and Physicians for Rx Access, a coalition addressing the issue of insurance cuts to compounded medication coverage.

Nov 24, 2014 Comments: 0

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